Mary Lou and Jerry Wilhelm are in their late 70s and in fairly good health, but they are far from empty nesters free to roam whenever they please.

Most mornings, Mrs. Wilhelm helps their 52-year-old mentally disabled son, Todd, get ready for the day at Lott Industries Inc. Then the Monclova Township couple must be on hand in the afternoon before Todd is transported home from the workshop, where he mostly socializes.

Yet the Wilhelms enjoy Todd and aren’t ready to place their middle child in a Sunshine Communities Inc. family care home — where he has been on the waiting list for 10 years. They just are in no rush to make such a heart-wrenching move.

“He came up to the top a couple of times. We just said, ‘We’re not ready yet,’” Mrs. Wilhelm said. “It’s just a very difficult thing. I don’t know how we’ll get through it.”

Several decades after parents fought to keep their developmentally disabled children home instead of institutionalized, aging residents continue to struggle over what to do with adult children who cannot live on their own.

Medical advances through the years have lengthened lifespans of those with Down syndrome and other developmental disabilities. The issue for aging parents first cropped up in the late 1980s and early 1990s.

“Parents never really expected their children to outlive them,” said Lon Mitchell, public information manager with the Lucas County Board of Developmental Disabilities.

Lucas County has more than 160 developmentally disabled adults with aging caregivers awaiting funding approval or an appropriate living arrangement. Todd is among those on the list, all of whom must qualify for an individual options waiver, as he has, so their lifelong care is covered by Medicaid.

The Wilhelms raised Todd along with their daughter and other son, who they know will oversee his care after their deaths, and never considered what would happen if he outlived them.

“Something like that never enters your mind,” Mr. Wilhelm said. “The years just roll on by.”

About 2½ years ago, the Wilhelms entered a new program housed at least for now at the University of Toledo that is funded by the Lucas County Board of Developmental Disabilities and the Ability Center of Greater Toledo.

Called Options for Tomorrow, the program helps parents and siblings create individual plans outlining services, finances, and other details for those with developmental disabilities, including information as basic but critical as likes, dislikes, and typical day.

John Trunk, the county board’s superintendent, said the program at UT’s Center for Successful Aging eventually could be used by other families, such as those with children who have mental health or substance abuse issues.

“It’s brought tears — it’s been difficult,” he said. “People don’t want to talk about death and dying.”

The goal is to have plans in place in case a crisis develops, and the free program is available to families with developmentally disabled members in Defiance, Fulton, Henry, Lucas, Ottawa, Williams, and Wood counties, said Debbie Keller, planning specialist at UT for the program.

Parents who are not residents of those seven counties can get a do-it-yourself folder to ease planning, Ms. Keller said. About 2,000 families in Lucas County alone could benefit from the program, which also can help younger parents whose children are out of school, she said.

“None of us really knows how long we’re going to be here,” Ms. Keller said. “It’s good to have these plans in place.”

Such planning has become even more important for Nancy and Richard Curley of Monclova Township, whose only child, Craig Curley, 49, has cerebral palsy and other disabilities. Mrs. Curley, 70, recently learned she has nonalcoholic cirrhosis, and she is pursuing treatment options.

“I want to make sure Craig is well cared for before anything happens,” Mrs. Curley said. “We are looking for the right spot.”

The Curleys tried settling Craig in a home a couple of years ago, but it didn’t work out. Ideally, they would like Craig to be in a family care home with no more than three other residents and lots of activities, they said.

Their son, Mr. Curley said, is very verbal and needs to be with others: “He speaks 90 miles an hour. You have to be a quick listener.”

Craig has experience living with another disabled person.

Mrs. Curley’s late sister, Ruth Maher, had cerebral palsy and lived with the family for 15 years. Her mother, Lacey Maher, had worried about what would happen with Ruth after her death, Mrs. Curley said.

Ann Seth of Monclova Township is another parent firming up plans for her son, Vijay Seth, a 45-year-old with Down syndrome. A few years before her husband, Dr. Satish Seth, died last year, the Seths moved to a house near daughter Anita Toska and her family.

One possibility after Mrs. Seth’s death is to have Vijay continue living with a care provider and perhaps another disabled person in the house, where he proudly shows his bedroom decorated with Star Wars collectibles and memorabilia from his Eagle Scout and Special Olympics accomplishments. Mrs. Seth said she is working with her daughter to finalize Vijay’s future living arrangements.

“You want your child to be happy,” Mrs. Seth said. “You want them to have as full a life as possible. And you want them to feel loved.”

Carlene Defalco, president of the Lott Industries parent group and a Lucas County Board of Developmental Disabilities retiree, has everything set. She moved into a house about a year ago that will continue to accommodate her daughter, Tammy Defalco, 49, who has Down syndrome.

They both have arthritis, so Mrs. Defalco chose a three-bedroom Sylvania ranch, where another developmentally disabled person could move in with Tammy as well as a caregiver as needed, all of which her two sons ultimately will oversee. Both women are aging and needed a house that is wheelchair accessible, she said.

“I knew what I wanted,” Ms. Defalco said. “I just had to find it.”

Contact Julie M. McKinnon at: jmckinnon@theblade.com or 419-724-6087.

First Published September 4, 2011, 4:30 a.m.